It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

I was scrolling through my photos and feeling pretty grateful. It was a day of strength. A shunt adjustment this week seems to have given me some reprieve.

I got to witness the joy of my little guy filling up a backyard pool.

I got to melt into a puddle of all the warm amazing feelings watching my boys head off together with their fishing poles.

I was able to stand long enough to make trendy sweet coffee drinks with my girl.

It has been good. /Good/

But then I swiped to the next picture and it hit me like an unsuspecting slap that stung like fire.

It was there because I had been going through some old photos a few days ago and I’d saved it to send to a friend. I had been building this incredible list of small mountains I’d climbed, and reveling in the joy and fulfillment I felt, and this memory of my past swiped my feet out from under me and sent me crashing through a wall of heartache that I was not ready for.

So much emotion tied up in that one simple picture. The immense joy that being on the fire department filled my soul with. The overlooked gift of being hold a brush to paint my nails. The ability to use my thumbs for a thumbs up. In a splinter’s worth of time, I went from great heights to a mind crushing low. I felt sad to have ruined my gratefulness, but as I talked myself through it, I came to realize that it was absolutely ok to feel what I was feeling. A hard memory doesn’t take away the joy of important moments with my people. Those two emotions can live together. I was reminded of a card I read this week…

“You can be angry and at peace. Curse God and whisper His name for help. You can be shaking and sobbing and strong. You can be grieving and grateful. Jagged and graceful. You can paint your nails and curl your hair. You can also not give a crap about any of that right now. You can hide quietly in your closet crying and dance to loud music in the kitchen while squealing in laughter. It can all hurt even when it feels good. You can feel so darn lonely in your head, and you can feel the vibration of the world holding you up in love and prayer. There is no book for dummies on this awful thing. I imagine your feelings change daily, sometimes by the minute. There is no wrong or right way to be. Just keep being.” -author unknown.

I have been bedridden since February. Not exactly how I hoped this year would start. I feel like I miss so much when I’m tucked away in the corner of my bedroom. Weeks tick by and I keep hoping to put the worst of this year behind me.

Enter Covid-19. Suddenly my babies are home all day every day, and I’m a first grade teacher lying flat on my back in bed. He hasn’t complained; each day he climbs up onto the bed next to me and we do math, reading, writing, science… nestled among the pillows. But my heart is sad, disappointed. I’ve been given this incredible opportunity to have my littlest boy by my side for weeks on end, and the reel of my mind spins fast thinking of all the creative and memorable things I could be doing with him during this most intimate season of learning. Instead I feel trapped; bound to the square corners of my king-sized bed and quickly losing my son’s interest in the monotony of the same assignments day after day.

My husband works overtime; committed to his full-time job while also managing all of the meals, the laundry, the errands, the breaking up of fights as the tension of this season wears on everyone. I see the overwhelm and worry in the lines of his face and in the soft hunch of his shoulders. He’s married 18 years, but acting the role of single parent to the children and caregiver to his young wife. It silently breaks me.

Like most people during these unprecedented times, I am grieving many losses. Cancelled trips, time spent with friends and family, going to my little’s viola concert, attending my firstborn’s high school graduation. All of the little daily comings and goings that make life seem “normal.” Add to that my inability to be up and around occupying myself, and my heart has felt heavy and anxious. I have intensely missed gardening. For years as the winter months dissolve I have started seeds in my windows that have grown to beautiful plants cradled in the warm earth and bearing armloads of delicious produce and extraordinary joy. During these months that I have spent studying the ceiling from my place in bed I have grown more and more sad that the therapeutic tending of a small vegetable garden won’t be happening for me this year.

Wood. Saws. Screws. Measuring and cutting and pounding and smoothing, and a triumphant grin from my big-hearted husband as he shows me the hearty garden bed he has built to coax me out into the sunshine. Since I hadn’t been able to start seeds this year, he brought home small potted stalks of green life, ready to place in the fertile plot of sunshine. Oh how my soul sang as I gave thanks for the opportunity to tend something so special to me.

It took days of reaching for strength, of practicing standing without being overcome by the pain and vomiting that has plagued my body, but one cool gray day it happened. I was gifted with a period of strength and calm in my body, and along with a first grader who was growing wiggly with math and phonics in my big bed, I grabbed my garden gloves and we made a dash for the large box of deep earth. Together with chilled fingers and dusty knees, my little and I carefully tucked the robust plants and some dry seeds into the well-worked soil. It took all of my portion of strength for the day, but when we finished I had such peace and an exuberant sense of anticipation to watch my garden grow. It was such a gift.

I love his face SO much!

But, 2020.

As I was closing the shades of my bedroom window that overlooks the garden, I peeked out at the neat rows of leaves and plant markers that I had finished a few hours earlier. I involuntarily sucked air in fast, sharp. My garden was in a state of upheaval. Plants toppled. Leaves torn. Stakes scattered. Ragged holes dug in the once smooth dark earth. After many days of not giving the raised box any notice, apparently our dog had decided today was the day to climb into it and go tearing around in circles, digging holes and trampling plants.

And I cracked.

In that moment, the future felt empty of all the things to look forward to. While I burrowed under my quilt and felt the hollow in my chest and the sting in my eyes, I thought to myself how absolutely minuscule it was in the big scheme of things. A garden. There are so many huge battles people are fighting around the world; cancer, unemployment, divorce, death of loved ones… the list is endless. My family is safe, employed, fed, and sheltered, and yet the toppling of my vegetable garden is what undid me. I started to feel a little embarrassed at my ungratefulness.

The more I thought about it though, the more I realized maybe we all are a little like that right now. Maybe we are all just one more thing from screaming at the sky and cussing out the dog for just being well, a dog. Let’s face it ya’ll, 2020 has been a loop-thrower for all of us. We are all faced with stress and change and uncertainty unlike any we have experienced. It’s not just the pandemic, it’s the pandemic plus all of the other little hiccups we normally experience as we go through life. For me it’s been surgery upon more surgery and complications that simply won’t go away and a flooded basement and a broken into camper and sick kid and a bunch of tiny little things that each on their own aren’t such a big deal, but when you throw them all on top of each other and then ice them with a global pandemic and sprinkle them with a life-altering illness, it’s enough to make a person crack. Cry uncle. Beg for mercy. Tell 2020 that we aren’t friends anymore, and maybe we never really were friends, and it should go straight back where it came from and take all of this crap with it.

Are you with me? I feel like there are a lot of yesses. We are in it together, so let’s get through it together. Let’s be gentle with each other. Let’s check in on each other even when we are the one that wants to be checked in on. Let’s look for ways to cheer each other on and hold each other’s arms up and scream our battle cry so loud and brave that it drowns out the fear and frustration and helplessness we feel and replaces it with the rising up of all the people who choose to believe that something better is coming, and that hope is worth grasping for.

Every time I’m on social media I see photos of people getting all their Spring cleaning done, exploring remote and beautiful chunks of outside, and doing fun and creative projects as they entertain and school their little ones. Just in case you don’t feel like you’re one of the ones out there killin’ it during this quarantine, I want to offer this up to you; solidarity.

This is month number three of lying as flat as possible because this stubborn spinal fluid leak won’t heal. I can’t be upright more than a couple of minutes without horrendous pain, and puking my guts out. That means Spring cleaning, nature exploring, and crafty projects are not happening in this house. The main man is juggling working from home as well as handling feeding the offspring and running any essential errands, I am making my first grader crawl up onto my bed so I can do homeschool lying down, and everyone is generally running amuck outside as well as consuming far too much screen time because, well, life right now. And guess what? We’re all going to be ok.

We all need to give ourselves a little grace and realize we are each doing the best we can. We are adapting and learning to overcome new challenges all while still embracing every good grace we can find and loving our people fiercely with all we’ve got. It doesn’t matter if you’re cooking a five course meal every night, or struggling through online learning in your pajamas every day, because no one gets to judge you. Do you.

Recovering from brain surgery is no joke. It’s been a lot tougher than I expected. I’ve not much made it out of bed over the past few weeks that I’ve been home. It’s easy for things to get dark when that’s the case, and add on this pandemic and the quarantine we are under, it doesn’t take long for things to feel like they’re closing in around me.

Today I managed to get up and go outside for a few minutes. My goal was simply to refill the birdseed at my window. The birds that come sit and peck at my window are such a beautiful source of joy to me. As I made my way through the backyard though, I noticed something. All around me, little colorful buds were standing proud on the trees and poking up from the leftover scraps of last year’s leaves. It took me by surprise. I guess in my sickness and discouragement, I forgot that Spring was coming. But just like the fluff starting to grow on the bald half of my head, new sprouts could be seen almost everywhere I looked!

I know a lot of people are feeling sad and scared and overwhelmed right now, so maybe that’s what we all need a reminder of. After Winter, Spring always comes. No matter how cold or how dark, those beautiful buds find their way back to meet days filled with sunshine. We may not know how long this hard time will last, but don’t forget the new beauty that is coming. It will be here. The hard Winter always forges the toughest stems and most beautiful blooms. Don’t forget to look for them.

Thank you to the many of you who have reached out to check on me over the last weeks. My silence prompted care and concern, and my people reaching out to me has been heart nourishing when I simply haven’t known what to say. I am wrestling through a new season; one of discouragement and questioning, and it’s often left me grasping so desperately for my own hope strings, I haven’t felt anything left to offer.

As the days are growing longer and the tips of new blooms are beginning to push into view, I am in the quiet of home with my closest people letting this new season of hope-finding be one of rest and healing. Not so much of my own choice, but my recent battles have forced me into a time of convalescence.

I am recently home from a 35 day stay in the hospital two hours from home. It started as a cerebral spinal fluid leak because of the medication pump in my spine. Three spinal surgeries and one brain surgery later, I was finally stable enough to come home. Flu precautions kept my little people from being allowed to visit, which made the days exceptionally long.

My sweet friends and family loved on me as best they could from a distance, and when my stay kept getting extended, my fire partner from Colorado flew out to spend a few days at my bedside. Much of it is blurry, as I was medicated and exhausted, and more than a few people got text messages from me that were impossible to decipher.

I’m thankful to have been carried through on the prayers of so many, as my own strength and determination has been quite sapped for awhile now. Getting a shower is the triumph of my days right now, and the remainder consists of lots of sleep, fluids, and trying to figure out how to style half of a shaved head. My littles have just begun their Spring Break, and I’m snagging them to snuggle as often as they’ll allow.

Thank you for your loving care during this time. Surely when I find my bootstraps I will grasp them once more, and challenge my days with more adventure and sass. For now I’m here resting, healing, thankful for each of your kind messages, and looking forward to sharing life’s next adventures.

I opened Facebook this week, and it didn’t take but a couple of swipes to see a pattern.

The Christmas season is upon us, and with the joy and anticipation, there are many people feeling heavier emotions as the day of wonder draws near. There are people having their first Christmas since the death of someone they love, and there are people who years later are still feeling the sting of someone’s absence.

For those who have lost a loved one, the celebration of Christmas will always have painful spaces that are difficult to fill. There will be an empty stocking, a missing ornament, a lonely heart. Please don’t ignore what is all around you; you can help make the holidays more bearable for grieving hearts. Help them remember, say their names, do something to let them know their loved ones are not forgotten.

We are all trying to find ways to include our people, even when they’re no longer here. Knowing that our family and friends remember our loss is a healing part of moving through grief.

Take the time to think through your friend list today, see who you can reach out to with a bit of encouragement as you remind them that you see their grief, remember their loved ones, and choose to help fill those empty spaces during this time of year.

There are many things I miss about being able-bodied, and one of the big ones is being able to be active. Working out or going for a hike or a run has always been one of the best coping skills and stress reliefs for me, and I struggle with not having a comparable activity now that I’m not able to do those things.

Though I usually ran just for fun, I had set a goal for myself once of running a race someday. I figured even if I did just a 5k one day, I could knock it off my list and enjoy the experience. Well I sat on that goal for too long, and it never came to be.

Fast forward to today… I came the closest I will to meeting that goal! My friend and fire partner, Michael, who has a lot of miles under his running shoes, teamed up with me to do a 5k together. We chose a virtual 5k that fit our friendship perfectly, mapped out a course, and he pounded the pavement while pushing me in my wheelchair. It was glorious! When I closed my eyes and listened to the rhythm of his feet against the ground, with the fresh air tossing back my hair, it almost felt like I was running.

I know it wasn’t easy; he had to navigate getting my wheels across places with no pavement, bump me up and down a few curbs, and push me up some ginormous hills.

He never complained, and just chugged along like a freight train. It was such a special day of fun and friendship, and I’m so thankful for Michael going above and beyond to help me accomplish something in the best way I could.